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My Hopsital Exp. Imuran-Mycophenolate/Cellcept... Lupus phnumenitis.
SERIOUS FATIGUE. Not coping. LACK of Family Support.

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#1 peaches2007

Posted 10 March 2012 - 01:21 PM

This post is kind of a combination of experiences/feelings I have been going through this last year...
would appreciate people to share their own experiences, coping techniques etc
I have had SLE lupus for 10 years. Tried all the meds from Plaq to Imuran with mostly negative side effects.
Last March I had a flare up while I was on Imuran.
From December to March I had an increasing inabillity of breathing. During this time I would lie on the couch at home all day with severe fatigue and would sleep up to 15 hours a day.
Finally, in the 3rd week of March it got so bad that Itried to walk to the top of our stairs to pack a bag for hospital that when I got to the top, I ended up laying there on the ground for 25 minutes recovering.
I was also having flash fevers... very bad ones of 41-42oc.
I WAS GASPING FOR AIR... I wwas so scared and felt terrible for my 4yo DD.
The frustrating part was during this time of feeling ill, my husband had accused me of 'Neglecting everything' and the night I rang him to come home from work early to take me to the hospital, continued to work for another 2 hours (at his own choice, he can leave when he wants to).
Anyway, makes you wonder who really cares??????
When I finally got to the hospital, I couldn't even speak 2 words without gasping for air. When they cheacked my Oxygen, I was only 87%... Anything below 95% requires immediate emergency care.
I was sent for an immediate MRI and what the results showed where horrible... all the fibres in my lungs were completely swollen.
The confusing part of it was that my blood tests for infection and my disease tests were both comming back negative.
I ended up getting an Endoscopy (one of the worst & most horrible experiences of my life!!!) and stayed in hospital fo 6 weeks received iv antibiotics even though infection test was negative and large daily doses of steroids (yay!)
The lung specialists and immunologists didnt know what to do with me as they could not diagnose.
Eventually, all they could suggest was that it may be lupus phnumenitis as a result of taking IMURAN.
Now, there are only a few ever recorded cases of this ever happening... but, I am one of those people that is usually a statistic/1 in a million cases)
They sent me home without an official diagnosis, left me on the imuran, increased steroids and I was back there with a fever and not breathing again 2 weeks later (oh well, at least I got to spend Easter at home!)
As I was officially under the care of the lung dept, and they had decided to leave me on the Imuran (even though that was probably the cause, get that?) I had to get my immunologist in there asap for an assesment.. He wanted to get me off the Imuran and try Mycophenolate.
I couldnt beleive the lung dept was trying to disagree!? My immunologist pushed his recomendations through and after I stopped taking the Imuran, my breathing eventually recovered and the fevers faded.
I have been on the Cellcept and prednisone for nearly a year now... I can breathe, but, I still feel like 'bleep'.
How can I be on all this medication and still be feeling like I should be in a hospital somewhere dying?
I am soo tired and grumpy. I just want to lie down all the time. This is not how I am.
We have had a family death and another is dying theres so much drama at my house I feel like I'm going to have a mental break down.. seriously.
My blood tests are fine, lupus not over active (but, of course they never are even when I'm dying)
Is my health state effecting my mental well being? I tried anti depresants, honestly... not my thing.. Yes, I found one that worked took it but I am still mentally and physically exhausted.
I know the lupus makes me tired and sick all the time, but.. it feels like it could be more. I snap at everything. It doesnt help that my 4yo dosnt listen to anything I ask her to do and is over the top messy...
I dont have much family support,  I do get what I'd call crumbs not often. And when ever I start to show slight recovery, all is quickly forgotten by others and the ol' horse has to put the cart back on straight away.
I feel neglected and pushed. Does anyone else often feel this way about those close to them?

Edited by peaches2007, 10 March 2012 - 01:31 PM.

#2 threelittlegems

Posted 10 March 2012 - 01:38 PM

OP, you experiences last year sound terrifying. Lying at the top of the stairs not being able to breathe thinking about your 4 year old....your post brings tears to my eyes.

What alarmed me about your post is that your husband didn't come home when you were desperately illl and needed him to. Did he apologise for this. Is he the person you are referring to as lack of family support, or your family in general?

#3 peaches2007

Posted 10 March 2012 - 01:56 PM

Yes, it was pretty scary.. initially I thought I had lung cancer. Thank Lord it wasn't!
Yes, I think it is just him that I have these feelings about. The rest of my immediate family are 4+ hours drive away. He seems to always be ignorant to the fact just how ill I really am. Whats weird is he can have a few tears about my illness every now and then but tears wont help me.
Firstly, his reson for not paying attention for the last 8 years was his brother was murdered, now its because he lost his mum 5 months ago... and his dad is in hospital dying.
So he pretty much some days I feel has a valid reason for not giving me the emotional support I need, but he is one of 6 and up until recently was the only one doing all the work involved for his mum & dad. He must feel terrible having sick people all around, but I feel like I am not getting the support I need from his as a husband.
How can you  say express in a nice way that your needs are not being met (without getting into an argument) with someone who is greiving?
I have been with him, supported him emotionally, looked after his parents when his own family would not all while I was sick. It just feels really unfair and I feel miserable alot of the time now. I even wake up thinking 'where is all this going'...
So sorry for these rants, this is just the only place I could think to come to... or an expensive shrink!! wink.gif

#4 FeralMinx

Posted 07 April 2012 - 12:14 PM

I can relate to many things you are saying.  I am doing much better now but in my younger years had chronic fatigue syndrome, spondylo arthorisis syndrome, endomitriosis/other cycle problems chronic back pain, chronic sciatica AND depression/bipolar/anxiety all together.  Fun times.

It started at puberty, so my first support network was my parents.  A few trys they gave, at being supportive, but I so relate to the attitude of 'neglecting everything' and 'get the cart back on, you've had 1 good day already'... etc.  Secondly it was my now ex husband.  Same deal.  Understanding in conversation at times, but in reality, just unsupportive and making matters worse (felt like kicking me when I was down) and making me feel more isolated and burdened than I would have done if single...

I relate.  But I don't have the answers.  If your DH will not become a reliable ally for you in your struggles, you would be much better off without him.  AND you would get more down-time as he would have your DD in his care a % of the time, and he wouldn't be able to expect you to put that cart on... he'd have to deal with it himself, and you could choose your own level of dealing with your own life.  At the same time, I know thats not what you are here to hear.

#5 whydoibother

Posted 08 April 2012 - 04:10 PM

Have they checked for embolii?  You sound like I was except i had PEs and effusions which have left me with plueral thickening.

I have SLE and I am on plaquenil, celebrex, warfarin, somac, panadol osteo/panadeine forte, and now methotrexate.  I thought that cellcept was for severe renal involvement?

My kidneys are fine.  I get bad joint pain and soft tissue swelling.  My lungs haven't flared up for about a year now (touch wood!).  
I am hoping the methotrexate will start to help me with the joint pain, the soft tissue I just have to keep walking etc

Imuran caused my aunty in law to have a bad reaction-she almost died (she has crohns disease).

Can they put you on methotrexate or sulfsalasine (spelling) instead with plaquenil?

My husband understands now.  It helps his Dad has ankolysing spondylitis and rheumatoid arthritis so he has some understanding of the pain.  My house is never perfect but my kids are fed, washed and wear clean clothes.

I find exercise in the form of walking helps and also breathing exercises help the lungs recover.  
Fatigue is always there for me in some sense but I do feel better than i did a year ago and I have only been on the DMARDS for about 8 months.

My family is in NSW I am in WA.  

Would your husband be willing to read some info about lupus?  I can try and find a link to a print out for partners and family members?

ehere is a helpful link about living with lupus:



Edited by IAmCal, 08 April 2012 - 04:13 PM.

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